The fight for our genes heads to court

Editorial

Published
4:00 am PDT, Sunday, May 24, 2009

Twenty percent of your body belongs to someone else.

Don't believe us? Check the U.S. Patent Office. Twenty percent of all human genes have been patented, mostly by private companies and research institutions. These patents are crippling the ability of scientists to study diseases and restricting patients from getting the information they need to make important medical decisions about their health.

This month, six breast cancer patients filed suit against Myriad Genetics, a company that owns both the patent on two genes that are associated with an increased risk for breast cancer and ovarian cancer and the patent on testing to measure those risks. Some of these women are suing because they can't afford the $3,000 fee Myriad charges to determine their risk for breast or ovarian cancer. Some of them are suing because, thanks to Myriad's patent, they can't get second opinions about whether they should have their breasts or ovaries removed - no one else is allowed to perform another test for them.

All of them are suing because they did not, and should not, expect to have such a crucial and excruciating medical decision stymied by patent officials run amok.

"The reason why everyone thinks this isn't right is that it isn't right," said Chris Hansen, a staff attorney at the American Civil Liberties Union. The ACLU represents the lawsuit plaintiffs, who include not just the six patients but also geneticists, women's health organizations and scientific associations representing about 150,000 researchers and laboratory professionals. "This is common sense. Patents were designed to protect human inventions, and you can't invent the gene."

You wouldn't think so, but the lawsuit's far from a slam dunk. The patent office has been handing over our genes to private companies for decades. This lawsuit "is a fundamental challenge to the way the biotech industry has been working," said Marcy Darnovsky, the associate executive director for the Center for Genetics and Society in Berkeley. "It may be a shock to people outside the industry, but in fact this has been the established way of doing business."

Myriad Genetics is a notoriously aggressive defender of its patents; in a recent statement, the company said it will "vigorously defend our intellectual property rights" against the breast cancer patients. This one could go all the way to the U.S. Supreme Court.

And it should. Genes belong to humanity - they are the basic building blocks of humanity - and they never should have been patented in the first place. This awful situation is the result of a mistake that dates back to 1980, when the Supreme Court granted a patent to a human-created bacterium. That decision, Diamond vs. Chakrabarty, opened the floodgates: The patent office began granting patents on not just human-created bacteria but also actual genes, which are most certainly not created by human hands.

Traditionally, the Supreme Court has held that no one is allowed to patent products of nature (like apples or gold), laws of nature (like E=MC squared) or abstract ideas (like gravity). Human genes would obviously fall under both the first and second categories, but "the patent office has been chipping away at that law for the last 20 or 30 years," Hansen said.

This bad decision has had real human costs. Several decades ago, scientists believed that single genes were responsible for complex diseases. In the intervening years, they've learned that complex diseases can be the result of 50 or even 100 genes in interaction with each other; when each of those genes is patented, "you get into this thicket of arrangements and licenses and astronomical fees," said Debra Greenfield, a post-doctoral fellow at UCLA's Center for Society and Genetics. "People wind up abandoning the research."

There is research that we, the public, could have had into breast cancer, heart disease, Alzheimer's disease and countless other diseases - but instead, the patent office decided it was more important for private companies to make money by holding information hostage.

The ACLU sees this as a civil-liberties issue and is fighting the case accordingly. "The concept that free speech means nothing without free thought is a pretty basic understanding of the First Amendment," Hansen said. "There is plenty of doctrine to support this. It's just never come to this particular field, patent law."